Please Don’t Tell Me What I Can and Can’t Do

When it comes to living with Multiple Sclerosis (MS), this is definitely one of my top 5 things that angers me above all else; when someone tells me that I can or can’t do something after I tell them the opposite. “I can’t do that”, “Yes, you can”. Now I don’t mean when I am at physical therapy and the physical therapist (PT) tells me, “just a little further” and I reply, “I can’t” and he/she reassures me, “yes you can, you can do it”. They are just trying to be motivationalwithin reason. That is fine, that is actually a good thing because I do find it to be motivating.

I can’t overcome the impossible

No, I am talking about when I say something like, “I can’t see that because I have a blind spot in my left peripheral,” and someone says (with an “oh please” attitude), “yes, you can, you can’t tell me that you can’t see that, you’re fine”. No, no matter how hard I try, no matter what I do, I can’t help the fact that I have a blind spot as well as other disabilities. To over-exaggerate (in order to paint a crystal-clear picture of my point), that would be like trying to tell someone who has lost a leg that if they simply tried harder they could run without any sort of aid like a prosthetic. Ehm… no… that would be physicallyimpossible.

Rediscovering my limits

You see, I have spent the last 7 years or so constantly rediscovering my own limits through the daily experiences of life with MS. At this point, I have a pretty good idea of what disabilities I have developed that are possible to either overcome or improve, and what disabilities I have developed that I, unfortunately, can’t. Not because I think they are “just too hard,” but because they are scientifically an obstacle in my life that effort alone cannot overpower.

Belittling my own experiences

So that said, this angers me as much as it does because when someone who has not personally experiencedmy life with MS still tries to tell me what I can and can’t do? It belittles everything I have been through over the years that have taught me the painful lessons of my limitations. “I am the one who struggled through all of this, not you, but now you are trying to tell me that you know better?” All I can think when this happens is, “don’t you think I would rather be able to say that I can do that? Do you think that I haven’t tried over and over again to maintain my ability to independently do so? I’m not saying that I can’t do something because it’s simply hard and I am being lazy about it, I’m saying that I can’t do something because I can’t.”

Understand that you don’t understand

If these people would listen to my explanation of why I can or can’t do something that would be a completely different story. In fact, to be clear, it’s not like I get all angry right away (usually). Often the anger doesn’t set in until I have tried to explain my limitations to someone more than once, but they refuse to take me seriously. Just because you don’t understand what I am trying to tell you about me does not mean that it’s all in my head, that I am crazy, or that I am just making up excuses. I understand that from the perspective of someone who does not have MS, understanding this disease is pretty difficult. I mean, I have the disease and it has taken me years to understand it as well as I do! But as I have said in the past, it is at this point that the best thing you can do (if you’re just not at all understanding what someone with MS is trying to tell you) is to understand that you don’t understand. It’s OK to admit that you don’t get it, because the alternative is settling on an untrue explanation that (though is easy for you to understand) leaves the person with MS feeling not only misunderstood but like no one even cares enough to try to understand them. Speaking from experience, that is one of the worst feelings I have ever felt.

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Comments

This article is right on time for me, this just happened to me last night and it hurt my feelings terribly.. I honestly feel like people don’t try to understand what I’m having to deal with and I don’t want to keep having to explain all my symptoms to them all the time..Thanks for sharing this because it helped me to described exactly how I felt…belittled..

I think people find TRYING to understand to be “too hard”, like, if they don’t “get it” right away, in just a few seconds, it’s typically not something they want to sit down and really try to understand.

As Fayje said, I think you bring a really interesting perspective to this conversation, Susan Elizabeth! I hadn’t considered the idea that friends and loved ones are in a form of denial. Thank you for sharing!

i don’t know if anyone can really understand unless they have MS. My husband was showing me a car that had wild paint scheme on it. I said I don’t like the wild pink on it, he said that is Maroon what is wrong with you. I told him I do have cataracts to calm him down. It is hard for him to understand that a lesion just touching my optic nerve can cause problems. So I blamed it on the cataracts even though they aren’t that bad yet. Potter

People can never TRULY understand what it is like unless they experience it too. All they can do is TRY to relate, to empathize, something that is not easy for a lot of people because it is a SKILL not something we are just born with